Every month, there is a JDRF Blogger Roundtable, hosted by Allison Blass.
This month, all the participants in the roundtable are being asked to submit any questions we may have for the newly hired President and CEO of JDRF, Alan Lewis, former CEO of Novocell. Here are some more details about him: http://www.jdrf.org/index.cfm?page_id=111174
I can only send up to 3 questions but I wanted to turn to you and ask you if any of YOU had any questions you would like me to ask on your behalf.
Please let me know before Monday, Jan. 26. Feel free to post the question here or send me a private message.
Having been diagnosed as a child and living with T1 for 30 years, it's been my personal experience and the experience of other T1 adults I know who were diagnosed as children that once a "juvenile" diabetic becomes an adult, JDRF is no longer invested in their interests. You can see it in their literature, ad campaigns and promotional materials - T1 adults are grossly underrepresented. I've participated in multiple informal discussions with my T1 peers and there's a feeling that JDRF doesn't represent our interests because we're not children, but the ADA doesn't either because they invest most of their resources into T2 since that's much more common than T1. Feeling completely alienated by the biggest organizations that are supposed to represent us, many of us have abandoned both. I understand JDRF was started by parents of T1 children and part of that current culture is historic, but is it a priority to change that, and if so, what is JDRF doing to change that, to represent the families with T1 that have grown up?
I totally agree with Lee Ann. As treatments get better and better, those T1 children are growing up into T1 adults that still have the T1 along with the extra responsibilities of wife, kids, bills, taxes and just trying to be a grown up most days. Not to mention that the families of those adult T1s get to deal with it every day too.
As the T1 and T2 populations (esp. T2!!) continues to increase, the dollars involved in treatment become so vast, there is very little pharma incentive to find any type of cure, only more treatments. The incentive needs to be on non-pharma funded research. I just have a hard time trusting corporations with that much money involved and am very cynical of it all.
I have felt for a number of years that the ADA is much more a political organization than an advocate for diabetics, they have allowed themselves to become very removed from the real world we all live in. The JDRF, I feel, does a better job, but their focus tends to be too narrow.
I third Lee Ann and Scott! That would absolutely be my question to the JDRF if given the opportunity.
And I share your opinions in regard to the ADA, Scott.
I feel like my voice in continued support of the JDRF is somehow unappreciated now that I'm an adult Type 1 and can no longer serve as a poster child, so to speak. I think that living as an adult with Type 1 has presented challenges beyond those I faced as a child and it would be helpful to have these needs or challenges better addressed in the future by the JDRF.
I think you already know what I would like to ask him... "Why not give more support to Denise Faustman?" Based on the reading I've done, her research deserves a pretty healthy amount of attention. Most others seem to be more of a band-aid whereas Dr. Faustman's seems to get to the root of the problem.
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